[AG89]

Good morning. My Fiance has RSD/CRPS in her left leg, likely brought on by previous injuries/surgeries arising from her past in gymnastics. I do my best to support her and help her, but honestly its so frustrating that I can't do anything to ease her suffering. I'm trying to find some information on using supplements in combination with or as an alternative to her medications.
In my (brief) research, I have seen positive inclinations for B vitamins (especially B1), Fish oil/omega 3, Vitamin D, among many others.
I personally like to experiment a bit with supplements, and have found use for things like phenibut, yohimbine, B vitamins, mucuna pruriens, creatine,spirulina, cholorella, choline, noopept, etc etc. I was especially thinking about recommending phenibut and a sublingual b vitamin complex. I have not tried it, but I was also thinking perhaps Gamma-Aminobutyric Acid based on what I read about it. I'm hesitant to recommend any of these because of any possible interactions with her prescribed medication.
Also, she may look into medical cannabis in the future as its going into a trial program in our state. Do any other RSD/CRPS patients have experience and feedback on medical cannabis? I have also looked into CBD but have seen a wide range of feedback on its usefulness.

Sorry for the long post.
tl;dr-I want to help my fiance and supplements are the best idea I have but I would appreciate feedback from people who know more than me.

[mrsD]

The most often used supplement here of usefulness to CRPS is Vitamin C. Also grapeseed extract . Both are antioxidants and may quell inflammation.
If you search these you will find posts about them.

Also useful are fishoil (or krill oil), magnesium chelate (not oxide),
B12 if testing shows lows, and Vit D.

You might try the better curcumin products, that are optimized for best absorption. Curcugel or CurcuBrain by NOW are very good. These reduce inflammation dramatically. Other curcumin supplements are not well absorbed.

I can't imagine a woman would need yohimbine.

These products would be best to begin with.. I don't recall seeing much else as helpful to CRPS.

[Jomar]

many of the interaction checker sites allow you to add vitamins and supplements to check everything- here are a few of them-

http://neurotalk.psychcentral.com/post1088873-69.html

[Littlepaw]

Welcome! What a good man, trawling forums to try and help your honey. Without much detail on her story I will give my standard schpiel of being entirely sure there is no inciting cause that needs to be treated and no nerve injury or entrapment that can't be ameliorated. Nerve entrapment often mimics CRPS and can often result from surgery or injury.

Gentle, consistent activity is important and getting in the pool helps a lot of people. I'm sure with your fiancé' gymnastics background she is all over rehab.

Vit C is helpful for sure and showed good results in prevention in studies. 500mg daily is recommended.

I take a supplement called PeaPure. It is the complex fatty acid palmitoylethanolamide. It works on the glia and decreases mast cell activity, theoretically bringing down neuroinflammation. I have to order it from the Netherlands but it comes pretty quickly. If you just Google PeaPure a site will come up to order. not sure I can post a link for that. The price is shown in Euro, but the exchange is good right now. It is not cheap but has shown good results in Europe for neuropathic pain so I figured it was a good investment. It is commonly used in Germany and Italy for nerve pain.

Keep up the good work and never give up on the potential for healing. Some well regarded experts give statistics of 80% of CRPS sufferers improving over time. Much of what is on the Internet is very doomsday in it's outlook. Ignore it! It is great to have information and to be prepared with a treatment team for whatever comes but don't project the worse onto the future. There are a lot of things to try and no one thing works for everybody. There will be trial and error. Stick with it and keep trying.

Sending Healing Love, Littlepaw

[swimtime]

Littlepaw, always ready with an encouraging word and lots of good info. You're a blessing to many here. By the way, how is nerve entrapment diagnosed? Is it the same as the test for nerve damage?

[Littlepaw]

ah heck Swimtime, that just made me feel all wondermous
Thanks!

Finding nerve entrapments can be tricky, Conduction studies can even have results that aren't terribly alarming. My damaged calcaneal branch showed 40% reduction and the physiatrist was not too worried because this branch doesn't always read well. The clincher was when the plastic surgeon peripheral nerve specialist did a "scratch collapse test" that was positive. These are more commonly done for carpal tunnel but it was done at my ankle. Shows the exact place of the lesion or compression. I saw two different surgeons before deciding on my procedure, one in Houston one in Dallas, both did a fellowship at Washington University with Dr. Susan Mackinnon who is a nerve guru, she uses this test all the time.

There are some videos of the test. There are also some fascinating articles on CRPS resulting from nerve compression, one seemingly hopeless case Mackinnon operated on with great results. I will dig up the links and post them.
Littlepaw

[maygin]

I did a bunch of research when I was first diagnosed and the vitamins I thought had promise were: vitamin C, fish oil, vitamin D, vitamin Bs, MSM, glucosamine, chondroitin, vitamin E, and lipoic acid. I take all of them except lipoic acid. I really think the fish oil helps with inflammation, but it requires a high dose (though be careful to not take too much). Also, be careful with taking too much vitamin E - I took the max and it increased my migraines, so I had to cut back.

[LIT LOVE]

The 4 F's Diet does help. A bit of the info is outdated, particularly it allows diet drinks which should be avoided.

http://www.rsdrx.com/Neurological_As...r_F-s_Diet.pdf